Lyme Disease Link to Fibromyalgia and CFIDS

Discussion in 'Fibromyalgia Main Forum' started by hopeful4, Dec 1, 2005.

  1. hopeful4

    hopeful4 New Member

    Thought I would re-post this for more to see:

    Lyme Disease and Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue (From the Fibromyalgia and Fatigue Center)


    Lyme disease is caused by a spiral shaped bacteria (spirochete) called Borrelia burgdorferi. These bacteria are most often transmitted by tics and mosquitoes. The spirochetes have been called “the great imitators” because they can mimic virtually any disease, which often leads to misdiagnosis. Patients suffering with a chronic illness and especially those with Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue should consider Lyme disease as a contributor.

    Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as ‘brain fog’. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer’s disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms.

    Patients with chronic Lyme disease often complain of ‘strange’ or ‘weird’ symptoms that cannot be explained even after going to numerous doctors and often results in the patient being told that it is psychological. Patients are often told that they are hypochondriacs and are referred to psychiatrists and counselors for treatment.

    Because the symptoms are so variable, most patients are usually not considered for testing or treatment. If testing is done, however, standard tests will miss over 90% of cases of chronic Lyme disease. The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation. The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data).

    If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%.

    There are also a number of co-infections that are commonly transmitted along with the Lyme bacterium, which include Bartonella, Babesia, Ehrlichia and others. There are different species in different parts of the country that can make testing difficult and insensitive. As with Borrelia, there is a very high percentage of false-negative results (test negative despite infection being present).

    Treatment of chronic Lyme disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst. Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease. Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy. A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment. This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).

    To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients.

  2. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    And very straightforward and accessible. Thanks.


    Jeanne
  3. 6t5frlane

    6t5frlane New Member

    What are Expanded Western Blot tests?? Is there a site we can visit for further explanantion of what you are saying
  4. jbennett2

    jbennett2 New Member

    What Test(s) to Order
    Based on our tracking, as well as input from our client physicians and our clinical consultant, the initial tests to order for Lyme disease are the IGeneX IgM and IgG Western Blot and PCRs. The Western Blots are used to determine if the patient is making antibodies. Since some patients do not make antibodies, the Lyme Serum PCR for DNA (# 453) or the Lyme Whole Blood PCR for DNA (# 456) is included in the initial panel.

    Thus, the Initial Lyme Panel includes both Western Blots and your choice of PCR:

    Panel 5000:
    #s 188, 189 & 453 (PCR—serum)
    Panel 5010:
    #s188, 189 & 456 (PCR—whole blood)
    If the above panel is negative, the follow-up test for Lyme disease is the Lyme Dot Blot / PCR Panel # 875. This panel looks for pieces of the bacteria in urine as well as the DNA of Lyme in the urine. Most physicians use an antibiotic challenge to make the test more sensitive. The antibiotic protocol, as well as the general instructions, can be found in the urine testing kit available from the laboratory. You may also call IGeneX for a copy.

    The combination of all of the above tests provides higher than 90% sensitivity and better than 95% specificity. Remember that Lyme disease is a clinical diagnosis and testing can support your clinical presentation.

    We also offer tests for the common co-infections of Babesia, Ehrlichia, and Bartonella. These co-infections are seen in approximately 20% of the patients with Lyme disease. The usual first tests to order for the co-infections are IFA antibody tests: # 200 Babesia microti; # 203 or 206 Ehrlichia; and # 285 Bartonella. In Northern California, Oregon and Washington State, # 710 (Babesia WA-1) is substituted for # 200 for Babesia antibodies. Panels have been established for the Midwest/Eastern Region (Panel 5020), the Western Region (Panel 5040), and the Southern Region (Panel 5050). The FISH test (# 640) is also used because it is a sensitive indicator of Babesia infection, even in the absence of antibodies.

    Test kits are available with shipping materials at no charge from IGeneX, Inc. Call 800.832